Just wanted to drop a note to say Thank You to all of you who are pioneering us through these early stages of CCSVI. Your posts and stories have given me and my wife hope that we haven't had since her original diagnoses. Just learning about CCSVI recently I kinda feel in a fog with anticipation and excitement, my wife who after being diagnosed just three years ago is already using a walker and only those of you with MS or who are fellow caregivers can truly understand what it feels like to have a real glimmer of hope.
Thank you for sharing your stories and giving other people the courage to follow. For providing a glimpse of what hopes to be the future of MS treatment, although I've never met any of you (have met Joyce and Steve before) it gives me tears of joy to see the positive things you write and I pray everything continues in the positive direction its going.
Again, THANK YOU!
Thank You
Hi Johnnymac,
Your lovely words echo sentiment that I’m sure many of us feel here.
I think we all share much of what you allude to in one way or another and it’s so wonderful to see how everyone on here is so supportive of one another. I’ve not been on here long either but I already feel an enormous sense of community and a really nice vibe. These are very exciting times for everyone affected by MS and it’s certainly a pleasure to share the company of you and everyone else on the site. All the best.
Your lovely words echo sentiment that I’m sure many of us feel here.
I think we all share much of what you allude to in one way or another and it’s so wonderful to see how everyone on here is so supportive of one another. I’ve not been on here long either but I already feel an enormous sense of community and a really nice vibe. These are very exciting times for everyone affected by MS and it’s certainly a pleasure to share the company of you and everyone else on the site. All the best.
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
Welcome Johnnymac!
You and your wife are fortunate - you have met Joyce and Steve -- I only know them through their thoughtful posts.
We have so many "newbies" here on the CCSVI forum. Hopefully, everyone is finding valid answers to their questions. The CCSVI story is hitting the Internet like warp speed and many of the blogs and sites are not posting factual information. Here, on TIMS, we are advocates for each other -- we question, we discuss, and we cite our quoted references.
I am sorry to hear about your wife's MS progression...she is lucky to have you standing by her side.
Sharon
You and your wife are fortunate - you have met Joyce and Steve -- I only know them through their thoughtful posts.
We have so many "newbies" here on the CCSVI forum. Hopefully, everyone is finding valid answers to their questions. The CCSVI story is hitting the Internet like warp speed and many of the blogs and sites are not posting factual information. Here, on TIMS, we are advocates for each other -- we question, we discuss, and we cite our quoted references.
I am sorry to hear about your wife's MS progression...she is lucky to have you standing by her side.
Sharon
Hi Johnnymac!
I am also a newbie and only found this site after the W5 special. My husband was diagnosed with PPMS 12 years ago. I know how it feels to have this glimmer of hope! Once I started reading about the research, I could think and talk about nothing else for days. Many of the people on this board have been the same way for over a year I think (is that about right?).
I have found this board to be full of extremely knowledgable, intelligent, warm, compassionate, honest, and hilarious people.
I'm sorry about your wife's progression. It's so terribly hard to not be able to do anything to stop it - Yet! I really hope that CCSVI is the answer.
Theresa
I am also a newbie and only found this site after the W5 special. My husband was diagnosed with PPMS 12 years ago. I know how it feels to have this glimmer of hope! Once I started reading about the research, I could think and talk about nothing else for days. Many of the people on this board have been the same way for over a year I think (is that about right?).
I have found this board to be full of extremely knowledgable, intelligent, warm, compassionate, honest, and hilarious people.
I'm sorry about your wife's progression. It's so terribly hard to not be able to do anything to stop it - Yet! I really hope that CCSVI is the answer.
Theresa
Re: Thank You
Johnnymac wrote:Just wanted to drop a note to say Thank You to all of you who are pioneering us through these early stages of CCSVI. Your posts and stories have given me and my wife hope that we haven't had since her original diagnoses. Just learning about CCSVI recently I kinda feel in a fog with anticipation and excitement, my wife who after being diagnosed just three years ago is already using a walker and only those of you with MS or who are fellow caregivers can truly understand what it feels like to have a real glimmer of hope.
Thank you for sharing your stories and giving other people the courage to follow. For providing a glimpse of what hopes to be the future of MS treatment, although I've never met any of you (have met Joyce and Steve before) it gives me tears of joy to see the positive things you write and I pray everything continues in the positive direction its going.
Again, THANK YOU!
A HUGE DITTO - Thanks from the bottom of my heart
Here's to hope !-
andrepol
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Thank You
My bigest worry will be now that the relatives of the one I love will do anything they can to keep her away from this operation.
Learning about CCVSI should have brought me an immense hope... but the good new came one month too late.
It won't be easy to get her to the operation now
Learning about CCVSI should have brought me an immense hope... but the good new came one month too late.
It won't be easy to get her to the operation now
Free Meie!: http://andrepol.webs.com/
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andrepol
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Sharon, you're right. I will have to learn becoming patient.
I really thank you for the notice. I'm not the one who is ill, often I believe it's even harder. Because the frustration, feeling so powerless, with a feeling of guilt...
I really thank you for the notice. I'm not the one who is ill, often I believe it's even harder. Because the frustration, feeling so powerless, with a feeling of guilt...
Free Meie!: http://andrepol.webs.com/
This is something that isn't ever said but its really true. I can't help wishing it was me and not my wife who has it, I feel guilty being healthy at times. I know thats not rational and the feelings come and go but I think its something that most caregivers go through.andrepol wrote: with a feeling of guilt...
As far as CCSVI goes, just do your best to educate those who need it. The evidence to this point is overwhelming and provides a pretty compelling story. Point them to all the information, let them digest it and see if their tune doesn't change. Send them here to these boards, that will set them straight!
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andrepol
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I understand so much!Johnnymac wrote:" I feel guilty being healthy at times."andrepol wrote: with a feeling of guilt...
But well, so "healthy", I'm not all the time. Maybe a bit less guilty as yourself I may feel.
I happen to have sometimes RLS and at other times Chronic Fatigue.
Annemarie is the only person whom I haven't hidden it because she's been the only one with the ability to understand how it feels and not to make any false judgement.
Free Meie!: http://andrepol.webs.com/